If you would like to register, please email 2 preferred usernames to oceanfisher@gmail.com. You will be registered and sent instructions.
To start viewing messages,
select the forum that you want to visit from the selection below.

***Unite(D) to Fight Paralyses.***

I've been thinking a lot about it lately.

A SCI survivor can never fix his/her own cord no matter how much he/she knows how to do it. Not even successful researchers can't fix their own cord if God forbid they turn SCI. this goes for the bashing "know it alls"

Can SCI's ever join forces to make things happen? Trolling and negativity doesn't seem to work. Can't depend on dishonest org's raising money in our namesake for own profit. Will continue to wait for things to happen on their own?

Any thoughts how to add that "D"?

It worked for Gays
It worked for Marijuana
It worked for women’s rights
??? does it make any sense? years are passing by in the meantime....

10 million sci's exists? What’s preventing to join forces that could potentially impact the world to move things forward and get done quicker?

Last edited by Moe; 08-20-2018 at 01:38 PM.

"Talk without the support of action means nothing..."
― DaShanne Stokes

Money and what is done with it seems to be the biggest challenge that I see. I agree advocacy and activism are needed, but money is what will make things happen.

I see many problems with a lot of the foundations and other organisations setup to find a cure, this list includes:
* Spreading resources too wide and thin - They try and fund all research from basic science -> acute -> chronic. I would suggest that the majority of people with SCI want a focus on chronic.
* Run by non-SCI people - The majority of the people making the decisions do not have an SCI, how can they speak for us? Worse, some people are making huge salaries from it.
* Don't take anything beyond research/trials - They won't fund anything commercial, even if it helps get something to us.
There are many other problems, these are just the ones at the top of my mind.

Now before I get shot down, I know this doesn't apply to all foundations and all the people who work for them, but the ones getting the big money do tend to have these problems.

I've been thinking for a while it would be great if there was a foundation that was focused solely on chronic cures with a commitment to get them to market.
Where every dollar someone put in gave them a vote as to how the money would be used. (Maybe with caps on the voting rights to stop abuse)
Commercial investments (into SCI cures) would be allowed, with profits going back into the foundation to create a snowball effect.

Basically anything that is needed to get a cure into our hands would be fair game, not held back by admin, loyalty, agendas and conflicting interests.

I hear you niallel, but money and foundations are already out there and intent is already questioned and will always be even if a new foundation opens... I was thinking more as a "unity" approach among fellow sci's getting exposed out there in huge groups fighting. right now we're transparent and non existent to the majority. A non-violent protest, getting out there in large numbers in events, public places, ralleys.... get the word out... get the media focused on us...

"Talk without the support of action means nothing..."
― DaShanne Stokes

Strange as it sounds, there is little commonality of interest within the spinal cord injury community. High quads are different than low quads, high, medium and low paras have their own issues and all these groups disassociate themselves from each other. There is no there, there.

Back of the envelop math says that our state and federal government probably spends close to $10 billion per year taking care of unemployed SCIs on SSDI, SSI and Medicaid/Medicare.
There are roughly 300,000 SCIs in the US.
Of those roughly two-thirds are unemployed, living on SSI, SSDI, Medicare and/or Medicaid.
So one could argue that a cure would alleviate that cost as well as adding a substantial number of those cured back to the US workforce.

So, yeah, it's a big impact.

Get the gov't to pony up $2 billion for SCI research and commercialization every year for 5 years and I'm pretty sure SCIs would be far, far better off.

Strange as it sounds, there is little commonality of interest within the spinal cord injury community. High quads are different than low quads, high, medium and low paras have their own issues and all these groups disassociate themselves from each other. There is no there, there.

This is frustratingly, maddeningly true. Low paras and incompletes who race wheelchairs are constantly lobbying to remove handcycles from marathon events because they don't like that the handcycles (who are scored separately) go faster even though many handcyclists don't have the function to race wheelchairs (lower back muscles needed). So SCIs want to discriminate against other SCIs who have less function than they do.

It just goes to show that a life-changing injury doesn't make you a reasonable person.

money and foundations are already out there and intent is already questioned

Thats exactly my point.

If the community owns and runs the foundation with EVERYTHING shared and out in the open, then we are in control of our direction.
The average person who donates to SCI doesn't know exactly what there money was used for, and doesn't know of the progress or results until a paper is published years later.

It sounds like you want to build a group of activists, I'm not saying there is anything wrong with that but it doesn't put anything into our hands.
You are going to be trying to get someone else to do something, and lets be honest the world is obsessed by "Me Too", womens pay, LBGQTXYZ+ etc.

Strange as it sounds, there is little commonality of interest within the spinal cord injury community. High quads are different than low quads, high, medium and low paras have their own issues and all these groups disassociate themselves from each other. There is no there, there.

I noticed that... but fair to say that everybody would share the same goal after the fight? no race or sex discrimination in the army... they all fight and give all they got as a team to survive and win. Each one on their own most likely get shot one by one...

"Talk without the support of action means nothing..."
― DaShanne Stokes

A SCI survivor can never fix his/her own cord no matter how much he/she knows how to do it. Not even successful researchers can't fix their own cord if God forbid they turn SCI. this goes for the bashing "know it alls"

Can SCI's ever join forces to make things happen? Trolling and negativity doesn't seem to work. Can't depend on dishonest org's raising money in our namesake for own profit. Will continue to wait for things to happen on their own?

Any thoughts how to add that "D"?

It worked for Gays
It worked for Marijuana
It worked for women’s rights
??? does it make any sense? years are passing by in the meantime....

10 million sci's exists? What’s preventing to join forces that could potentially impact the world to move things forward and get done quicker?

The causes you list are all social causes. It takes no money to legalize gay marriage or decriminalize the sticky-icky, or give women the right to vote, and there are also no technological challenges to doing any of these.

A SCI repair (cure is a silly term for fixing an injury) is technically impossible at the moment. People have ideas, but even if you had a hundred billion dollars today and devoted all of that to fixing your spine I bet your paralyzed ass would still be sitting in a wheelchair(albeit probably a much nicer wheelchair) 50 years from now.

fixing a destroyed spinal cord in a living human isn’t some simple feat like splitting the atom or traveling to the moon and back safely, it’s complicated stuff. Curing cancer is much simpler than fixing a spinal cord, all you have to do is kill the bad cells instead of grow brand new three foot long neurons all wired “correctly” to long atrophied muscles and peripheral sensory neurons.

I don’t think any amount of “uniting” could have brought about a cure to syphylis in the Stone Age, and when it comes to rebuilding the brain and spinal cord we’re just figuring out how to pound the first bronze spear-tips. If AI and technology continue to progress maybe we’ll have a true cure for chronic SCI in 200 years or so, but I wouldn’t hold my breath, it’s likely to be much longer.

The causes you list are all social causes. It takes no money to legalize gay marriage or decriminalize the sticky-icky, or give women the right to vote, and there are also no technological challenges to doing any of these.

A SCI repair (cure is a silly term for fixing an injury) is technically impossible at the moment. People have ideas, but even if you had a hundred billion dollars today and devoted all of that to fixing your spine I bet your paralyzed ass would still be sitting in a wheelchair(albeit probably a much nicer wheelchair) 50 years from now.

fixing a destroyed spinal cord in a living human isn’t some simple feat like splitting the atom or traveling to the moon and back safely, it’s complicated stuff. Curing cancer is much simpler than fixing a spinal cord, all you have to do is kill the bad cells instead of grow brand new three foot long neurons all wired “correctly” to long atrophied muscles and peripheral sensory neurons.

I don’t think any amount of “uniting” could have brought about a cure to syphylis in the Stone Age, and when it comes to rebuilding the brain and spinal cord we’re just figuring out how to pound the first bronze spear-tips. If AI and technology continue to progress maybe we’ll have a true cure for chronic SCI in 200 years or so, but I wouldn’t hold my breath, it’s likely to be much longer.